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Treatment for Treacher Collins syndrome (TCS) depends on your child's age and how much they are affected. Because your child's face grows along with your child, the timing of the treatments is very important.

For instance, performing a jaw surgery when the jaw is not finished growing will result in a jaw that looks good at first, but may need to be operated on again when growth is complete. Your doctors will recommend treatment based on your child's needs.

Below is a list of medical problems that your child may have. Addressing each medical problem may involve a number of specialists.

Not every child with Treacher Collins syndrome will have problems in all of these areas. A special plan and group of doctors will be assigned to your family based on your child's needs.

Treacher Collins Syndrome Treatment Options

Feeding and breathing

Babies with TCS may have a small jaw or cleft palate, and your doctor will pay special attention to their breathing and eating during infancy.

Because of differences in the face, some babies may have difficulty with breast and bottle-feeding. It will be important to make sure that your baby is gaining weight appropriately. A dietitian may see you in the clinic to review your child's diet.

If breathing is a problem, your doctors will discuss the options to manage and correct the cause, such as positioning devices, tubes, and jaw advancement procedures. In some cases tracheostomy (a breathing tube placed in the windpipe) is required.

Hearing

All newborns should have a hearing screening, usually performed in the birth hospital or within a few days of birth.

If problems are found, further testing will be done. More detailed hearing testing will be performed in the first few years of your child's life.

An audiologist (hearing specialist trained to test hearing in infants and children) will perform different types of hearing tests as your child grows, based on hearing status and ear health.

Our otolaryngologist (ear, nose and throat specialist) and audiologist will talk with you and your child about hearing management. This includes issues such as the best place for your child to sit in the school classroom, whether hearing aids are needed and how to prevent further hearing loss.

Your child may need a computerized tomography scan at about 4 years old, when the growth of the ear is nearly complete, to examine their middle and inner ear structures.

A CT scan is an X-ray procedure that takes a cross-sectional view of the body, which is enhanced by a computer. Most times, children this age do not require any special medicine to help them sleep during the scan.

CT scans are used to find out whether surgery to restore hearing is likely to be successful.

Ears

By the time that your child is 6 to 8 years old, their ears have almost reached their adult size.

If your child needs ear surgery, the first surgery is done after 6 years of age. Some families choose to do nothing.

For other children, the difference in their ear shape is bothersome and they chose to have surgery to reshape the ear.

Most surgeries to improve ear shape require at least three operations over a period of time. Your doctor may show you pictures of other children who have had ear reconstruction. The ear looks better after the surgeries but it will not look completely normal.

Another way of treating an abnormally shaped ear is to make an artificial or prosthetic ear. This approach also requires several surgical procedures. This is a way to make a normal-looking ear that matches the other ear.

Although prosthetic ears look normal, they need to be removed, and the area needs to be cleaned once a day.

Face

If your child has cleft palate (an opening in the roof of the mouth), our surgeon will talk with you about repairing the palate, usually at about 1 year old.

Lower eyelid surgery may be recommended to improve lid function and appearance if problems of eye exposure or infection occur.

Deficient or missing cheekbones can usually be rebuilt with bone grafts. Usually this is done after 5 years of age and when most of the eye socket growth is complete.

Nasal surgery is sometimes recommended early for functional reasons, or it may be suggested when growth is complete for both function and appearance.

Jaw and teeth

Good oral hygiene is important for all children, but especially those with craniofacial disorders.

A dentist and/or orthodontist will examine your child to assess general dental health, to check for crowding of the teeth, and to check how well the upper and lower jaws fit together. Some children may need a dental appliance or braces to provide the best dental appearance and function.

A variety of appliances may also be used to prepare for jaw surgery to correct remaining facial and jaw problems.

If your child has a small jawbone, your doctor may recommend a bone graft (an extra piece of bone) to lengthen the jaw or make a new jaw joint. We first consider this option when your child is between 4 and 7 years old.

In some cases, your surgeon may recommend using a technique called distraction osteogenesis to lengthen the jawbone. This technique uses a small metal device to slowly lengthen the bone without requiring a bone graft.

The team will talk to you about what treatment is best based on your child's needs.

Speech

Some children with TCS have differences in the muscles in the back of the mouth that can lead to differences in the way they speak (called velopharyngeal insufficiency).

If you or your doctors have concerns about your child's speech, your child will be referred to a speech pathologist.

Who Treats This at Seattle Children's?

Should your child see a doctor?

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Spring 2014: Good Growing Newsletter

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